Utilisation des toxines botuliniques pour soulager la douleur réfractaire et d’autres symptômes du parkinsonisme

Background: Parkinson's disease (PD) and other parkinsonian syndromes are chronic, progressive neurodegenerative diseases. With advancing disease, both motor and non-motor symptoms represent a considerable burden and symptom relief and quality of life improvement become the main goal of treatment. Botulinum toxins (BTX) are an effective treatment modality for many neurological conditions. Methods: To understand the potential usefulness of BTX in this population, we performed a retrospective chart review of all patients with a clinical diagnosis of idiopathic PD and atypical parkinsonism who received treatment with BTX injections in our center from 1995 to 2014 for a variety of symptoms. Response to BTX was assessed using a subjective Clinical Global Impression. Results: Records of 160 patients were reviewed. Probable idiopathic PD was the diagnosis in 117 patients (73.1%). The main indication for BTX treatment was pain (50.6% of cases). Other indications were the treatment of functional impairment resulting from dystonia (26.25%), sialorrhea (18.75%), freezing of gait, and camptocormia. Considering pain as indication, 81% of all patients with PD reported benefits after the first BTX injections. This benefit was maintained after the last recorded visit without significant difference in outcome compared with the first injection (p=0.067). Similar results were observed in patients with atypical parkinsonism. Conclusions: Our results confirm the safety and efficacy of different uses of BTX in the symptomatic treatment of patients with parkinsonism even in advanced stages of the disease, and suggest BTX treatment could have a safe and useful role in the treatment of pain in this population.Contexte: La maladie de Parkinson (MP) et les divers syndromes parkinsoniens sont des affections neuro-dégénératives chroniques et évolutives. Avec la progression de la maladie, tant ses symptômes moteurs que ses symptômes non-moteurs finissent par représenter un fardeau considérable. Le soulagement de ces symptômes et l’amélioration de la qualité de vie des patients deviennent alors le principal objectif d’un traitement. À cet égard, les toxines botuliniques (« BTX ») demeurent une modalité de traitement efficace dans le cas de nombreux troubles neurologiques. Méthodes: Afin de comprendre l’utilité potentielle des toxines botuliniques, nous avons procédé à un examen rétrospectif des dossiers de tous les patients qui, après avoir reçu un diagnostic de MP idiopathique et de syndrome parkinsonien atypique, ont bénéficié dans notre centre, de 1995 à 2014, d’un traitement par injection de toxines botuliniques pour toute une gamme de symptômes. La réponse à ces toxines a ensuite été évaluée au moyen de l’échelle Clinical Global Impression. Résultats: Nous avons passé en revue les dossiers de 160 patients. Des cas probables de MP idiopathiques ont été diagnostiqués chez 117 patients (73,1 %). Fait à noter, le soulagement de la douleur était le principal motif justifiant un traitement par injection de toxines botuliniques (50,6 % des cas). D’autres motifs étaient avancés : traiter un handicap fonctionnel résultant de la dystonie (26,25 %), la sialorrhée (18,75 %), des blocages (freezing of gait) et la camptocormie. Si l’on s’en tient à la douleur, 81 % des patients atteints de la MP ont signalé des bienfaits à la suite des premières injections de toxines botuliniques. Ces bienfaits ont perduré après leur dernière visite attestée, et ce, sans qu’on ait observé de différences significatives dans les résultats par rapport à la première injection (p = 0,067). Des résultats identiques ont été constatés chez des patients atteints d’un syndrome parkinsonien atypique. Conclusions: Nos résultats confirment à la fois la sécurité et l’efficacité des différents usages des toxines botuliniques dans le soulagement, même à un stade avancé, des symptômes de patients atteints de parkinsonisme. Ils suggèrent aussi qu’un traitement par injection de toxines botuliniques pourrait, sans danger, jouer un rôle utile dans le traitement de la douleur éprouvée par cette catégorie de patients.Fil: Bruno, Veronica Andrea. University Health Network. Toronto Western Hospital; Canadá. Consejo Nacional de Investigaciones Científicas y Técnicas; ArgentinaFil: Fox, Susan H.. University Health Network. Toronto Western Hospital; CanadáFil: Mancini, Deborah. University Health Network. Toronto Western Hospital; CanadáFil: Miyasaki, Janis M.. University of Alberta; Canad

Prognostic predictors relevant to end-of-life palliative care in Parkinson's disease and related disorders: A systematic review

Parkinson's disease and related disorders (PDRD) are the second most common neurodegenerative disease and a leading cause of death. However, patients with PDRD receive less end-of-life palliative care (hospice) than other illnesses, including other neurologic illnesses. Identification of predictors of PDRD mortality may aid in increasing appropriate and timely referrals. To systematically review the literature for causes of death and predictors of mortality in PDRD to provide guidance regarding hospice/end-of-life palliative care referrals. We searched MEDLINE, PubMed, EMBASE and CINAHL databases (1970-2020) of original quantitative research using patient-level, provider-level or caregiver-level data from medical records, administrative data or survey responses associated with mortality, prognosis or cause of death in PDRD. Findings were reviewed by an International Working Group on PD and Palliative Care supported by the Parkinson's Foundation. Of 1183 research articles, 42 studies met our inclusion criteria. We found four main domains of factors associated with mortality in PDRD: (1) demographic and clinical markers (age, sex, body mass index and comorbid illnesses), (2) motor dysfunction and global disability, (3) falls and infections and (4) non-motor symptoms. We provide suggestions for consideration of timing of hospice/end-of-life palliative care referrals. Several clinical features of advancing disease may be useful in triggering end-of-life palliative/hospice referral. Prognostic studies focused on identifying when people with PDRD are nearing their final months of life are limited. There is further need for research in this area as well as policies that support need-based palliative care for the duration of PDRD

Palliative care and Parkinson's disease : meeting summary and recommendations for clinical research

Introduction: Palliative care is an approach to caring for patients and families affected by serious illnesses that focuses on the relief of suffering through the management of medical symptoms, psychosocial issues, advance care planning and spiritual wellbeing. Over the past decade there has been an emerging clinical and research interest in the application of palliative care approaches to Parkinson’s disease (PD) and outpatient palliative care services are now offered by several movement disorders centers. Methods: An International Working Group Meeting on PD and Palliative Care supported by the Parkinson’s Disease Foundation was held in October 2015 to review the current state of the evidence and to make recommendations for clinical research and practice. Results: Topics included: 1) Defining palliative care for PD; 2) Lessons from palliative care for heart failure and other chronic illnesses; 3) Patient and caregiver Needs; 4) Needs assessment tools; 5) Intervention strategies; 6) Predicting prognosis and hospice referrals; 7) Choice of appropriate outcome measures; 8) Implementation, dissemination and education research; and 9) Need for research collaborations. We provide an overview of these discussions, summarize current evidence and practices, highlight gaps in our knowledge and make recommendations for future research. Conclusions: Palliative Care for PD is a rapidly growing area which holds great promise for improving outcomes for PD patients and their caregivers. While clinical research in this area can build from lessons learned in other diseases, there is a need for observational, methodological and interventional research to address the unique needs of PD patients and caregivers

Psychological Impact of Parkinson Disease Delusions on Spouse Caregivers: A Qualitative Study

There is growing research on carers of people with Parkinson’s disease (PD) experiences. However, the impact on carers by PD delusions is not specifically examined. We conducted a qualitative study using semi-structured interviews of spouse carers of PD patients with delusions. Thematic analysis was employed using MAXQDA 2018. Twelve spouse participants (SPs) were interviewed. Four themes emerged: Managing incredulity: trying to make sense of delusion content; Hypervigilance: constant alertness to bizarre and threatening discourse and behavior; Defensive strategizing: anticipating delusions and potential consequences; Concealing and exposing: ambivalence about disclosing the effect of delusions yet wanting support. SPs reported effects on their emotional well-being and marital relationship and challenges to an orderly, predictable life. SPs were reluctant to share their experiences due to delusion content (often infidelity and sexual in nature) and a desire to protect their spouses’ image. SPs’ awareness of the potential for delusional thought was low prior to their occurrence. Conclusions: education surrounding potential neurobehavioral changes should occur for patients and carers. Clinicians should be aware that the impact of delusions on carers is often greater than disclosed in clinical interviews. Interdisciplinary teams speaking separately to spousal carers may improve disclosure and delivery of appropriate psychological support

Parkinson’s disease advanced therapies - A systematic review: More unanswered questions than guidance

In advanced Parkinson's disease (PD), therapeutic interventions include device-aided therapies such as continuous subcutaneous apomorphine infusion (CSAI), levodopa-carbidopa intestinal gel (LCIG) infusion, and deep brain stimulation (DBS). We reappraised the evidence guiding the decision of appropriate device-aided therapies in advanced PD, and systematically reviewed the literature (including ongoing clinical trials) comparing CSAI, LCIG, DBS in terms of efficacy and cost-effectiveness, with particular consideration to possible conflicts of interests. Of 14,980 documents screened, sixteen were included (4 and 13 studies examining efficacy and cost-effectiveness, respectively). LCIG and DBS showed higher efficacy compared to best medical therapy (BMT). DBS was more expensive than BMT and LCIG. Lifetime costs of CSAI were lower of those of DBS, and DBS lifetime costs were lower than those of LCIG. The majority of studies (11 out of 16) showed direct or indirect sponsorship from pharmaceutical or device companies. Only one ongoing clinical trial comparing LCIG with DBS was found. Device-aided therapies address unmet needs in advanced PD. LCIG and DBS are superior to BMT in head-to-head studies; however, initial and lifetime costs should be considered when choosing those therapies. Guidelines to assist clinicians and patients to choose device-aided therapies, free from conflict of interests, are required

Parkinson's disease and Covid-19:Is there an impact of ethnicity and the need for palliative care

Under the traditional models of care for People with Parkinson's Disease (PD, PwP), many of their needs remain unmet and a substantial burden of motor and non-motor symptoms they experience may not be tackled sufficiently. An introduction of palliative care (PC) interventions early in the course of PD offers profound benefits: it may improve quality of life of patients, their families and caregivers through the prevention and relief of medical symptoms, while, at the same time, emphasizing their emotional needs and spiritual wellbeing, establishing goals of care, and engaging in the advance care planning (ACP). The ongoing Coronavirus Disease 2019 (Covid-19) pandemic poses an unprecedented set of challenges for PwP and has in many ways (both directly and indirectly) magnified their suffering, thus rapidly raising the demand for PC interventions. Covid-19, as well as the repercussions of prolonged mobility restrictions and limited health-care access might exacerbate the severity of PD motor symptoms and interact negatively with a range of non-motor symptoms, with a detrimental effect on quality of life. Greater motor disability, higher amount of levodopa-induced motor fluctuations with an increased daily off-time, fatigue, anxiety, depression, sleep disturbances, pain and worsening of cognitive complaints might dominate the clinical presentation in PwP during the Covid-19 pandemic, alongside raising psychological and spiritual concerns and anticipatory grief. Here, we aim to provide a foundation for pragmatic and clinically orientated PC approach to improve quality of life and relieve suffering of PwP in the context of the current, ongoing Covid-19 pandemic